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Old 05-27-2012, 05:01 AM #11
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Well, regardless of who wants to know or doesn't, who cares and who doesn't care, there are still times that I think broadcasting my symptoms can work against me. Especially the cognitive ones.
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Old 05-27-2012, 06:57 AM #12
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Yes, I agree on that one. Generally cognitive impairment is not shared; mostly because even if a detailed description of what that may mean were included, people still tend to jump to their own conclusions and/or create their own story-line. It is not commonly known that for the most part, intelligence remains pretty much intact; even though the expression of it may be slower or impaired.

When the brain goofs, I find that brushing it off as a symptom of 'mental-pause' (my gender and age fit), satisfies most people and is an easy, light hearted way to move past the incident.

When cognition is really bad, I keep conversations to a minimum and carefully proof read all emails and correspondence. It is also less stressful to stay away from friends and family as well as the public; and thus I don't go to work at times like that.
In short, the more severe it is, the more I hide it as much as possible.

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Old 05-27-2012, 07:40 AM #13
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YES YES YES, Erika, you were able to express it so much better than my attempts!

I do NOT have dementia. I'm not going to drive on the wrong side of the road, forget where I live, or walk down the street in my undies. I'm not a danger to myself or society (well, any more than the next person).

I don't "fake it" with my kids, they know the deal. But "out there"--I claim, "Oh, duh, brain cramp!" I laugh (on the outside) and go on as if nothing happened.

Even though I want the public to be aware of ALL of the possible symptoms and problems of MS, I don't necessarily want MY people to be making assumptions about my intelligence that aren't so.
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Old 05-27-2012, 11:12 AM #14
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Quote:
Originally Posted by Blessings2You View Post
Well, regardless of who wants to know or doesn't, who cares and who doesn't care, there are still times that I think broadcasting my symptoms can work against me. Especially the cognitive ones.
Got it Blessings..
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Old 05-27-2012, 05:47 PM #15
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One of the strange cognitive things I have is to look right a something and not see it. I am searching for an object and it's right in front of me, but I look all over the immediate adjacent area (as on a sink counter) and cannot see it. This would usually be because there are other objects my brain is "cataloging", and misses the one I want. Sometimes I can only find it by slowing down deliberately, scanning each square inch of the are, and usually that way I can find it. When I belonged to an MS support group, this was one of the main neuro glitches people had. Very common.
It is not the same as seeing the object as something it isn't. It just is not there.

I understand those who don't want others to know about this. In the long run it will harm us to have some people know this. They will ultimately use it as an excuse to put us in a "home", if we live so long that a "home" is usual. I am afraid of this, because I don't like the food in assisted living places. They are not the Swank diet I am on and they would do the Swank very badly. I have been in a rehab twice due to injury, and they could NOT get my concepts on food at the first one, which was moderately priced: when I said I avoided soy, they refused to bring any bread which MIGHT have soy, even as a trace on a pan that baked the bread, so I was starving and losing weight, as the food was not very nutritious and I needed to eat all that was available, unlike at home. My soy problem was not an allergy, it's a sensitivity problem with Porphyria, which means a tiny amount would not overstress the Porphyrin system in my body, but no one came to discuss this. Then, at the other rehab I was in, it was a very expensive one, and covered by Medicare this time (or else I couldn't have been there) and at this place I COULD get my food needs pretty well addressed, good enough so I could live there. But Medicare does NOT cover long term care, and of course I couldn't have gotten LTC when younger due to my dx. I can't afford a good place.
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